What I Did During My Recent Break

RA Guy Adventures of RA Guy

During my recent break, I rode through fields of black, volcanic sand. I brushed my hands around, and felt the thick blanket of electrical energy that surrounded every square inch of my body. (Volcanos will either drain you, or amp you right up.) I drove past field of seemingly endless llamas and vicuñas. I stopped to take photographs of pre-Incan burial mounds. I soaked in thermal waters. I watched the sun set.

I also got completely slammed by the arrival of winter. I reminded myself that this is to be expected, as it happens every year right around this time. I reminded myself that the worst would soon pass, and that even when it seems like I may just be doing a little, I’m actually doing a lot. I scheduled extra hours of physical therapy, on top of the numerous sessions I already attend on any given week.

I was mesmerized by the audio and visual storytelling beauty of movies such as “The Secret of Kells” and “Song of the Sea”. I read “Waking: A Memoir of Trauma and Transcendence” by Matthew Sanford. I thumb through my dog-eared copy of “A Resilient Life: Learning to Thrive, Not Just Survive with Rheumatoid Arthritis” by my friend, Kat Elton. And I learned a lot from reading “Taking Charge: Making Healthcare Appointments Work for You” by Ricky White.

I built upon my love of Sigur Ros music, and explored the some of the latest sounds coming out of Iceland. (See “Nordic Fire”, The New Yorker, May 1, 2017.) Anna Thorvaldsdottir. Iceland Symphony Orchestra. Jon Leifs. Nordic Affect. Schola Cantorum Reykjavicensis.

I played with my dogs, and enjoyed nice meals with my husband. I helped assemble the collection for this year’s RA Guy Foundation Festival of Gloves. (Exciting things to come this year!) I woke up early. I slept in later. I struggled some mornings more than others, as the temperatures continued (and continue) to drop on a daily basis.

I reminded myself that everything was okay.

And I smiled.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Things Do Get Better

RA Guy Adventures of RA Guy

“The pain never goes away. But things DO get better.”

In the years following my RA diagnosis — when I struggled just to come up for air between endless bouts of excruciating pain — I frequently heard the words above, from people who had been living with this for a long time.

And I didn’t get it, no matter how much I tried to wrap my head around these words. How could such a concept possibly be true? The pain *has* to go away. There’s just no other way…

This year I enter my fifteenth year of living with this disease, and I find myself more and more often saying these exact same words to people who are just starting their own RA journeys. No, the pain won’t go away. But yes, things do get better.

This change in perspective won’t happen on its own; we must first open our minds to the possibility of it being true, even if it seems the furthest thing from the truth at the moment.

We must turn our focus onto LIVING, each and every day. And before you know it, even while the pain is just as bad (and maybe even worse) than it’s always been, you’ll look around yourself one day, and declare: yes, things have indeed gotten better!

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Embracing the Pain

RA Guy Adventures of RA Guy

Over the past couple of months, I’ve made a concerted effort to EMBRACE the pain. (Even more so than I’ve done in the past…)

And while is hasn’t been easy, it has been possible.

I know what many people might be thinking — it’s *never* going to happen, RA Guy (embracing the pain, that is). I totally get that, because I myself thought the same thing for years.

But I’ve learned that by consciously and intentionally embracing my pain, I’m able to APPROACH the pain without feeling scared, or feeling the need to escape. I am then able to more clearly EVALUATE exactly what is going on. Only then can I READJUST as necessary, and figure out what I can do to best take care of myself…mind, soul, and body.

And then I do it.

And instead of interpreting the increased anxiety (which never does go away completely) as a signal to run away from the pain, I instead use it as a reminder that if I slow down and breathe, everything will indeed be okay.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

On The Freedom That RA Has Brought Into My Life

RA Guy Adventures of RA Guy

I move when I can, and rest when I can’t.

I rarely make any commitments before 12 noon.

I start my day by soaking in a long, hot bath…followed by sweeping the hardwood floors in my house. (The sweeping is both a meditative, and physical, exercise…it helps me stretch, and warm up.)

98% of what I eat are made-at-home meals that start from fresh, unprocessed foods.

Sugar and dairy are HUGE inflammatory triggers for me, so I’ve eliminated them almost completely.

I’ve also stopped eating all other animal products (other than fish and seafood), and have noticed an overall reduction in my pain and inflammation levels.

Artificial flavors and chemical sweeteners send my body into an immediate downward spiral, so I stay away from them religiously.

I tried pharmaceutical medicines for years on end, and they only made me worse. (Prednisone nearly killed me.) So at a certain point, both my rheumatologist and I decided this wasn’t the path for me.

I’ve gotten used to people attacking me for the way I treat/manage my RA. But that’s okay. Because in the end, the only person who knows what’s right for me, is…me.

I exercise as much as I can because if I don’t, my muscles quickly start to feel like they’re falling in on themselves. (Years of extreme electrotherapy allowed me to regain flexibility in my contractured/atrophied muscles…and while they’ve gotten better, they’ve never lost the memory of what happened.)

I don’t worry about what might happen tomorrow. I don’t fret about what happened yesterday. I take a deep breath, and live for today.
I try to help others, because in doing so, I help myself.

I no longer have anxiety attacks; if only because I know all they do is make any bad situation worse. It wasn’t easy to reach this point, but I was ultimately able to train my mind to do so.

I don’t deny my reality, ever. In fact, when the pain is at it’s worst, I try to connect with it the best I can, and learn something new about the pain, and about myself.

I’ve stopped beating myself up when my symptoms flare. (Again, doing so is probably one of the last things that will help, when I’m in such a situation…)

I no longer label my days as being “good” or “bad.” A day is a day, to appreciated in all its beauty, and uniqueness.

When I see others struggling with their disease, I wish them the best (I really, really do)…because I’ve been in that place, and I know just how scary, overwhelming, and never-ending it can feel at times.

I feel fortunate to have reached a better place; one where my RA is still present every minute of every day, but where I’ve figured out how to LIVE with it, best I can.

And even having reached this spot, I sometimes still fall back into that darkness…but when I do, I remind myself that it’s only temporary.
And all of a sudden, things don’t seem so frightening any more…everything becomes another opportunity to learn, and to remind myself that while I many not always be able to control everything, I can still control a lot.

I appreciate the freedom that this disease has brought into my life.

These words may seem shocking to some people, I know…but the truth is, every time I lose control of part or all of my body, if for even a minute, my mind no longer abides by the physical limitations that result from the pain and inflammation.

Instead, it soars.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

Festival Of Gloves

RA Guy Adventures of RA Guy

Hugs, laughs, and snuggles come easier with the perfect winter gloves.

So warm. 100% alpaca wool in all 12 styles for silky, ultra-warm, durable comfort. So colorful. Wide range of colors, from soothing to vibrant. Perfect for strong winter hands. So affordable. High quality at lower prices. You deserve the rewards.

Festival of Gloves starts October 3rd.

> Learn more at raguyfoundation.org/festival

The RA Guy Foundation is a 501(c)(3) non-profit organization that aims to surround the person affected by rheumatoid arthritis with vibrant, life-changing connection so they can learn to truly LIVE with the illness.